Living With an Invisible Disability

In 2011, following the famous 25,000 recruitment of youths into the public service, a protest was called by persons living with disabilities that they were sidelined during the recruitment process. I think this led the Ministries of Social Affairs and Employment to launch a new recruitment program exclusively for persons with disabilities.

I was encouraged to reapply after I failed to make it at the first stage. Discouraged but even more discouraged at the thought of staying a home year in and out looking for a job, I gathered my files and underwent the reapplication process. I thought it would be an easy and seamless process but wow! That day, while at the center we were directed to, I had a big challenge depositing my documents.

You see, our society has a preconceived notion of how a person living with a disability ought to look like. We have to be unkempt and beggarly. Anything out of the ordinary was a pretense. So here I am. Neatly dressed, clean, and smelling good. Carrying a well-arranged folder with higher degrees, not just a First School Living Certificate, and the man who had to take my documents, the first question was, ‘Are you sure you are a person with a disability?’ Who in their right mind goes out there to pretend to be disabled or suffering from something?

I am sure some people may do that but doubt my disability because I didn’t fit into the perceived notion of a person with a disability. More so, my hearing impairment wasn’t visible like those who came with crutches or wheelchairs, or guard sticks were equivalent to me being a pretender. And I wondered how visible our disabilities have to be for people to consider us disabled where our words do not seem to suffice.

I lost my hearing before I could complete primary school. I could say when I was about seven or so. Contrary to what many may think, I wasn’t born with a hearing problem which in later years has grown worst and has somehow affected my speech. Living with sickle cell anemia means I am prone to some complications resulting from sickle cell. My hearing loss is one such complication. In a way, it makes me live with two invisible disabilities and health challenges.

Life was relatively every day while growing up. Despite the many hospital visits and painful, sleepless nights, I did have a relatively normal and happy childhood. I have my family to thank for this. I wasn’t treated any different from others except given a little more care and attention, but for the most, I went about my life as usual as possible. The school was good. I had teachers who were understanding and supportive, and as such, with the help again of my family, they understood my challenges and provided the best possible support they could give, given that there was a marked lack of support in place for persons with special needs and which sadly, not much has changed since then.

This notwithstanding, not everyone was understanding. I had to deal with my share of stigma when some could refer to me as Mumu or half-die. These days, I shrug it off and sometimes even see it as a means of humor when I write to drive home some points about the realities of living with a double invisible disability. My family’s support and belief in me didn’t leave lasting damage on my person and self-esteem, but you can be sure as a child, it still robbed me of, and I didn’t find it funny.

These days, as someone living with and advocating for persons living with sickle cell and other disabilities, I am trying to use my lived experiences to change the narrative and misconceptions around these groups of persons. I share my experiences, hoping to raisesing awareness of this group’s challenges.

Let’s take the example of living with a disability during this pandemic period. Everyone is expected to mask up. Communication is becoming an increasing chore. I mean, it is draining when you have to ask people to take down their masks when they communicate with you because you need to read their lips to ‘hear’ them, and sadly, very few are understanding and cooperative. Many give you the side eye; maybe they think we want to come and intentionally infect them with COVID, it is difficult to tell, but I tell you, it is a most frustrating experience to go through almost every day.

As more and more people carry their conferences, schools, and workshops online, many with disabilities continue to miss out. I can’t tell you how many conferences or opportunities I have bypassed because of a non-inclusive policy. And I can’t explain how often I draw this need for inclusion to organizers and often get disappointed when promises to be inclusive don’t materialize. One finds herself staring at the computer screen in frustration, willing and wishing they could hear. I am forever grateful to organizations like World Pulse because they go above and beyond to make their programs all-inclusive. I believe many could do the same. The willingness has to be there.

Speaking out through my online and offline advocacy work on sickle cell is one way I used to change the narrative around this often neglected and highly misunderstood genetic blood disorder. Through my now yearly online color awareness #BreakTheSilence… #BeASickleCellVoice campaign, we are helping to educate the community. Still, we are also helping to demystify and change perceptions and negative misconceptions around sickle cell, helping people see our realities and how to support us better.

I could say it has been one of the most effective ways of raising awareness around the sickle cell and changing mindsets year in and year out; many join me in wearing red for this noble cause while supporting me morally and financially in my efforts to support others living with sickle cell that are in dire need of support. Many now understand the need to be sickle cell aware, know their genotypes to help them make informed life decisions, and be more empathetic towards people living with sickle cell. There is still so much to do, but these are little strides I am grateful for because it makes it all worthwhile putting my life out there and telling my reality, which many going through similar challenges do identify with.

We try to go about life as usual as possible. Still, these challenges will always be there, except society takes lengths to be inclusive and disability friendly. There is a need to make access to services more inclusive. Couldn’t it be nice to have sign language interpreters in a place where we go for services? Couldn’t it be nice to ensure the needs of special needs kids in schools are met and cared for? Couldn’t it be nice that conference organizers consider inclusion when organizing conferences, workshops, seminars, etc.., online and offline?

Couldn’t it be great when genotype testing and newborn screening are made a national priority in the fight against sickle cell so that more and more people are screened and kids diagnosed with sickle cell are placed in a better care plan? Couldn’t it be suitable for those with sickle cell to receive quality and affordable medical care, which helps improve their quality of life and give them a chance to grow to reach their full potential? Couldn’t it be great when employers, for instance, see the potential first before the health condition?

The ‘couldn’t’ are many, but one thing is true, for a progressive and more inclusive society where everyone is allowed to unleash their potential and be valuable members of society regardless of their health and social challenges, every hand has to be on deck. It will take the efforts of the powers that be and civil society to come together for a better way of handling these daily challenges resulting from living with both visible and invisible disabilities.